Dr. Jeff Hersh: Cause of painful bladder syndrome unknown

Dr. Jeff Hersh

Tuesday

Apr 28, 2009 at 12:01 AMApr 28, 2009 at 11:22 PM

Q: I have been experiencing debilitating pain in my pelvic area for almost two years now. At first it would go away for a while and come back, but it has gotten worse. I also have chronic urine infections. What could this be from?

Q: I have been experiencing debilitating pain in my pelvic area for almost two years now. At first it would go away for a while and come back, but it has gotten worse. I also have chronic urine infections. What could this be from?

A: You should see a urologist and mention the possibility that you have interstitial cystitis (IC), the topic I will cover in today's column.

IC, also called painful bladder syndrome, is an idiopathic condition (we don't know what causes it) which manifests as bladder and/or pelvic pain, as well as urinary urgency and frequency, and can have significant negative impact on the patient's quality of life. Symptoms from IC can fluctuate from person to person, and from time to time for a given patient, making it a tricky condition to diagnose.

Over 1 million Americans are diagnosed with IC; over 90 percent are women and the typical age at diagnosis is 30 to 50. However, given the misunderstandings surrounding this disease and the fact that it is not usually diagnosed until four years after symptoms begin, it is likely that this condition is under-diagnosed.

Since over 70 percent of IC patients have "leaky" bladder linings, some researchers theorize that IC occurs due to a defect in the lining of the bladder, possibly due to antiproliferative factor which blocks normal bladder lining growth, impairing the protection of the bladder wall cells.

The National Institute of Diabetes, Digestive and Kidney Disease criteria for the diagnosis of IC are based on this understanding. According to these criteria, in addition to symptoms of IC outlined above, patients must have glomerulations (small, pinpoint areas of bleeding) in multiple areas of the bladder or Hunner's ulcers (erosions in the bladder wall), when examined via cystoscopy (direct visualization of the inside of the bladder using a special scope). They must also have no other causes of the symptoms or cystoscopy findings, so urine infections and other bladder diseases must be ruled out.

There are other tests to help diagnose IC. For example, patients may be tested to see if they have symptoms when a potassium solution is instilled into the bladder, but not when a water solution is used to fill the bladder. This is based on the idea that the leaky bladder lining allows the potassium solution to seep deeper into the bladder wall, causing irritation and symptoms.

Many IC patients have things that trigger their symptoms. Common triggers include having a full bladder, or certain foods or liquids. Therefore, some patients benefit from bladder training and/or dietary changes. Other common triggers include menstruation, seasonal allergies, stress and sexual intercourse.

There is no treatment that is known to prevent "attacks" or progression of IC, however, heparinoids may theoretically help by restoring the integrity of the bladder lining. Scarring and stiffness of the bladder are also thought to contribute to the symptoms of IC, so bladder distention (where the bladder is intentionally overfilled to "stretch" it out) is often helpful.

Many patients need other therapies to help control this chronic, painful condition. Oral pentosan polysulfate is approved by the FDA to treat the bladder pain from IC, however, many patients require other pain medications as well. A type of antidepressant medication (tricyclics) is sometimes used for IC as well as for other chronic pain conditions, and is believed to help by interfering with pain nerve activity. Other types of pain medications may also be required, including non-steroidal anti-inflammation drugs (NSAIDs) and/or narcotic pain medications.

For patients who do not respond well to any of these treatments, or who need to avoid these medications due to side effects, dependency (particularly for narcotic medications) or other reasons, other treatments modalities are sometimes indicated. These patients may benefit from transcutaneous electrical nerve stimulation (TENS) or from a permanently implanted electrical nerve stimulator to stimulate the sacral nerve.

As a last resort surgery is sometimes considered, possibly including the extreme step of removing the patient's bladder and using a piece of intestine to function in its place. Unfortunately, even this procedure may not relieve symptoms.

Patients with IC should be followed by a specialist knowledgeable in this disease since it often remits and relapses, and symptoms may progress over time. Therefore, the specialist will need to work closely with the patient to determine what treatments are most appropriate for them, knowing that any decision may need to be revisited if and when the patient's condition changes.